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Caeliac test but GF?

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Posted 9/21/2015 12:28 PM (GMT 0)
Hi

I had a colonoscopy last year and they took biopsies to test for caeliac which came back negative. But no one said anything about eating gluten at the time and I had been onna gluten free diet for a while. Does this mean the test could be inaccurate or is it safe to say I'm not caeliac?

I'm just trying to figure out whether I can tolerate gluten or not as I'm having persistent gastrointestinal problems for about 2 months with no relief. This is just the latest flare in years of problems. The only thing I haven't cut out consistently during this time is gluten.

Post Edited (Andy1986) : 9/21/2015 6:41:04 AM (GMT-6)

Posted 9/21/2015 1:57 PM (GMT 0)
When getting tested for celiac disease, you have to be consuming gluten daily for 4 weeks for the endoscopy and up to 12 weeks for the blood tests. Often not enough biopsies are taken. The small intestine is vast (size of a tennis court), so it is easy to miss patches of damaged villi.

The University of Chicago and the British GI org have specific guidelines:

http://www.cureceliacdisease.org/medical-professionals/screening

http://gut.bmj.com/content/early/2014/06/10/gutjnl-2013-306578.long#T2
Posted 9/21/2015 4:18 PM (GMT 0)
Thanks, they did find inflammation in my terminal ileum but I was negative for Crohns so is currently a mystery why my intestine is inflamed, but maybe I hadn't been eating enough gluten for the tests. I don't know why no one bothered to tell me I had to eat gluten.
Posted 9/22/2015 4:01 AM (GMT 0)
I would recommend getting copies of your colonoscopy procedure and the pathologist's report for the biopsies (if they even took any). Normally, you should have an endoscopy (from the mouth). Often they will take biopsies from a colonoscopy if they can reach it. If you are still eating gluten, you might ask your PCP, GP, or GI for a celiac blood panel. Keep eating gluten until
all testing is complete! Geez, you would think that a GI would follow normal diagnostic protocol when testing for celiac disease!

You might even consider a second opinion from another GI. I am not a doctor, but your symptoms should sound like you have CD!

When and if you do go gluten free -- research, research, research! It is a huge learning curve but the payoff is good health! I'm doing pretty well after two and a half years of being gluten free!
Posted 9/23/2015 4:15 PM (GMT 0)
I dont think Ive got much chance of getting detailed results from my pathology, here in the UK the reports are awful. I've only eating gluten about 8 times in the last few weeks and those times I did reintroduce it I felt worse about 36 hours later, could be coincidence but I'm feeling so unwell at the moment I dont want to risk it. I think I will try keep completely GF for 2 months and see what happens. If I do somehow get better I might reintroduce it for a bit to see if it does cause problems.
Posted 9/23/2015 11:05 PM (GMT 0)
I understand. Please try to give the GF diet at least six months. Some celiacs take a year or two to finally feel well, but at six months you should see improvement. Remember, each gluten exposure can set you back for weeks or months!

Good luck!
Posted 9/24/2015 6:43 PM (GMT 0)
Thanks. I've been feeling awful all week and last ate gluten on Sunday, not been to the toilet since so its still in there. I really hope it does help because nothing else seems to be working :(

I've checked my vitamin supplements and cleaned my kitchen and cutlery so hopefully there's not much left. I don't think I'm that allergic as I've been through periods of living off bread and felt unwell but nothing too bad, could still work and go out and do things. But I had some antibiotics 2 months ago and its set everything off, since then had horrible reflux problems and nausea which bread makes a whole lot worse.
Posted 9/24/2015 10:42 PM (GMT 0)
Let's just assume you have celiac disease. Eating gluten (hidden, accidental, whatever) will cause a autoimmuine attack (flare-up) that can last a week, a month or six months! Having gluten exit your system does not mean you will feel better. Antibodies are enraged and only time and strict gluten avoidance can bring them down. In this instance we are lucky that we know what can trigger an autoimmune attack. Those with MS, RA or lupus rarely can tell what triggers a flare-up. Those AI diseases are much harder to manage.

The bottom line is if you are going to go gluten free, it is either all or nothing. Give it at least six month.

I wish you well.
Posted 9/25/2015 9:28 AM (GMT 0)
Thanks, ill give it a full 6 months then, just wish I would go to the toilet soon and get it all out of my system as I feel I can't start recovering until its all gone. Is it possible to have an autoimmune condition without visible inflammation? I get most symptoms in my esophagus but it usually looks normal on endoscopy.
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